Welcome! I am Patti Smith with the Healthy Shelby Partnership in Memphis. I am pleased to present the first pait of our three-part webinar entitled Initiating Advance Care Planning Conversations and Capturing Reimbursement. In the first segment, you will learn about why this conversation is so impo1tant to your patient. Our presenter is Jeri Ashley, System Director for Life Planing and Palliative Medicine Services at Baptist Memorial Healthcare Corporation in Memphis. Jeri is an advance practice nurse certified in oncology, hospice and palliative care, as well as having more than 40 years experience in nursing, nursing administration, and training healthcare providers. Jeri, let's get staited. Good morning. It is very nice to be here. In this first section of the webinar, we will set the stage for why this topic is so impo1tant to us today, not only to healthcare providers, but also to our patients. The first topic is called, (SLIDE #1) Why Conversations Matter.
We are going to look at some statistics that tell us why these conversations do matter. (SLIDE #2) 90% of people report that talking with their loved ones about future health care decisions is very impo11ant; however, only 27% of them have actually done so. These discussions can be difficult and they cannot cover decisions about every medical treatment or technology that may be available at the time the serious illness occurs or progresses. So, the conversation consists of having a shared understanding of the quality of life one values and a discussion of those qualities that give their life meaning, for example, being able to communicate with their loved ones. (SLIDE #3) 80% of people say that if they are seriously ill, they would want to talk to their doctor about planning for future healthcare. Sadly, only about 7% of the patients rep011 that they have ever had this conversation. In a study of the role of the physician in advance care planning revealed that greater than 60% of those interviewed believed that ACP is an impo11ant task, however, few rep011ed doing so with their patients.
(SLIDE #4) 70% of patients say that they would prefer to die at home but 76% die in institutions: 50% die in hospitals and 25% die in nursing homes or long-term care facilities. Early advance care planning discussions both with family members and physicians would make a drastic difference in these statistics. (SLIDE #5) At the time when health care decisions are necessary, 50% of patients are unable to make them. And without preparation families are ill-equipped to decide. Often, family members are chosen, without knowledge of being appointed as a decision-maker or health care agent by the patient. When called upon to respond to physicians and healthcare providers' questions, they are not prepared to answer them. When pushed, they will unreliably predict patients' choices. And, regardless of whether family members choose aggressive therapy or comfort, the evidence shows that family members suffer from stressful flashbacks to those days when decisions were made. They are left, at the time of the patient's death, still unsure that they did the right thing. Lastly, if healthcare team members are uncertain what patients want, they will en- on the side of life. Patients may get care that they do not desire.
(SLIDE #6) This slide reports the patient priorities for care during serious illness... It is clear that they want good pain and symptom control. They do not want their dying prolonged; rather they want quality living prolonged. They want information and they want it in a way they understand. They want a sense of control. This is a need very closely related to the need for information. Health care and disease info1mation given in a maner that can be understood give patients a greater sense of control. Next, they do not want their families burdened, yet in the absence of an advance care planning conversation, the families don't always know their wishes. Conversations really do matter to get across to the family members what that patient wants. It requires a conversation, sometimes multiple conversations. The patient wants their family relationship strengthened. That can occurs during these conversations as one get into the nitty-gritt of discussing life and death situations and what matters deeply to the patient.
(SLIDE #7) Advance care planning allows to patients have less depression believed to be related to facing death, control due to having a health care plan, and because their family is prepared. They believe, when their doctors understand their wishes from their advance care plan, that that doctor understands them better as a person and actually cares more. I have heard patients even say, "my doctor thinks I am special. He really understands what I want." For doctors to understand what is in that living will represents to the patient knowledge of their personal values, not just their disease condition. The patients are better prepared for death. They have actually looked at it and examined and in doing so are less afraid. Caregivers when info1med are able to advocate for the patient and report fewer burdens and repmt calmness during their grief trajectory related to their knowledge that they did the right thing for their deceased loved one. They know they did the right thing. They may be sad that their loved one is gone, but while the patient
gave the caregiver the gift of knowing their wishes, the family member gave them the gift of honoring their wishes. (SLIDE #8) Why don't we plan ahead? These four graphs help us understand the reasons why we don't plan ahead. First of all, if you ask 100 people in the United States, how you would like to die, the vast majority of them would say they want to die in their sleep. (SLIDE # 9) They want to die suddenly. This shows that trajectory in a graphic representation with the vertical axis showing function and the horizontal axis showing time, although no time frames are noted. The only place where advance care planning really has a role here is for disposition of the remains and possibly funeral plans. However, the point of this slide is that only 10% of patients will die this way. 90% of us will die one of these other ways. (SLIDE #10) Patients have a very high level of functioning during diagnosis and treatment, often working and busy with family and other activities. They continue to do the things they do and are able to manage symptoms during treatment. At some point, the patient does hit the slippery slope and will progress toward their death. Cancer patients do not plan their health care ahead because they are
functioning at a high level and are reaching for a cure. However, at the time of the slippery slope, they are not always decisional, thus no ACP is implemented. And prognostication is not accurate. In a study which included physicians from 35 specialties, the accuracy was only 17%. The purpose of planning ahead is to get ready before that time that these decisions are needed. Having those conversations early really does matter. (SLIDE #11) Next is dementia and frailzy. So as you can see, the patient at diagnosis is often at a very low functioning level. The patient sort of dwindles toward their death. And anywhere along that line, the patient can lose the ability to make decisions. Advance planning is needed early before they have gone into that deep forgetfulness or into the debility of frailty. Earlier conversations with families and with the patient's really do make a difference. (SLIDE #12) Now, organ failure. This is a traject01y marked by a steady decline, but also punctuated by periods of illness where hospitalization may be required. For the patient, they have always recovered well. But at some point, that trajectory does not go back to baseline. They do not recover. It is often difficult for the
healthcare provider to know when the dip will be the one that takes the patient's life. So for both the patient, the patient's family and the physician, planning ahead is important. (SLIDE# 13) How can the healthcare providers help their patients plan? We will examine the two important paiis of the advance care plai1. One is having a written plan called an advance directive. Second is deciding on the decision-maker. (SLIDE #14) Let's look first at the decision-maker. Choosing the decision-maker is imp01iant and to do so eai ly. Patients need to be encouraged to figure out what their desires are for healthcai e. What do they value about their life? What gives their life quality? What is the line in the sand where the patient would put their foot down and declare, "This is enough treatment? I wish to live the remainder ofmy life in comfort with my symptoms managed and doing those things I need to finish before death comes." What are those things that the patient is not willing to forfeit and that a healthcare decision might prevent from happening? For example, if cognition was imp01iant to me and that was going to be impacted by either my
condition or by a designated health care tteatment, would I want my life artificially prolonged? The defining qualities of life vary from patient to patient and they are dependent on a lot of different life factors. When picking the decision-maker, the patient needs to pick someone who is aware of those values. They need to know what kind of leeway they have for making the decisions. Not everything can be perfectly and easily decided during times of health care crisis. Second of all, the decision-maker needs to have a copy of the written directive, which we will discuss in a moment. Thirdly, that decision-maker needs to be someone who can stand in the gap in a time of crisis decision-making and respond as an advocate for the patient's desires. Often, these decisions are requested at the doors of the ICU. Patients really have to prepare their decision-maker as best they can for what kind of care they wish to have. You will notice on here that we listed the different states. The decision-maker is called by different names depending in which state the family initiates the advance care plan. The last point I will make about the decision-maker is it is the patient who empowers the decision-maker. It is not the
healthcare provider. The patient appoints his or her decision-maker or decision makers. (SLIDE #15) The second impmtant of an advance cai:e plan is the one that is written. The first exan1ple we show here are the state fonns. They ai:e primarily focused on medical decisions. This may be something you introduce the patients to and ask them to give some serious thought and then have them come back at a separate time to discuss the options. What they need to focus on is the quality of life is that they desire during selious illness. Once the patient knows the quality of life they desire, the physician can guide them in completing document in how the medical decisions will enhance or remove that quality. Once the written plan is completed, be sure to get a copy for the medical record. Patients may also tell you they have a copy of an advance directive. When they bring that in, I highly encourage that you look clearly through that to make sure that it is a proper healthcare document.
(SLIDE #16) The second option is the Five Wishes. This is the number one living will used in our country today. It is patient friendly and is printed in 28 different languages. For example, each page of the document is printed with two colmm1s - on the left column is a language such as Chinese and then the right column is printed in English. Five Wishes is approved for use in 42 states and costs five dollars or less depending on how many copies the family member may purchase. It can also be done online for the same five dollar price. The patient has 30 days to complete it when using the online mode. Once the online docmnent is completed, the patient can print it off, sign it with two witnesses present and it will be ready to distribute to family members and their healthcare providers. (SLIDE #17) Although not required in Tennessee, Mississippi or Arkansas, an atto1ney can also be used to do a living will as well at financial wills and estate plannng. (SLIDE #18) Fmther, these slide shows examples of specific forms such as the Spanish form and the Catholic form.
(SLIDE #19) To learn more, here lists a few patient friendly sites for assistance. The "Prepare for your Care" actually reviews the steps of preparing and completing an advance care plan. It uses videos to aid in that process and has both English and Spanish options. Second, the American Bar Association helps patients decide on a decision-maker when they cannot speak for them. Lastly, the Pew Research Center has infonnation on how religious beliefs impact our medical decisions (SLIDE #20) To close this section, I would like to mention a special thanks to the four groups that are working together in a community coalition here in Tennessee and are supp01iive of this webinar today. I hope you will stay tuned for the remaining sections of the webinar focused on advance care plam1ing discussions and capturing reimbursement.